I have not felt the need to "publicly" respond to any of the comments that I receive related to my posts has been necessary before. My general sense is that most comments are of the "keep your chin up" or "thanks for sharing" variety. And while I certainly appreciate the support that those type of comments provide, they have not caused me to want to post a response. However, three versions of one question were posted the other day related to one of my blog entries, and I feel somewhat compelled to pontificate...
"Do you feel your experience with cancer has been more difficult as an intellectually sound individual? Has the pro-active spirit made the journey mentally taxing as well as physically? I guess what I'm trying to say is do you sometimes feel others are fortunate with an ignorance is bliss attitude?"
First, I appreciate being called an "intellectually sound individual." Some days I am not so sure that's the case. :) But the question is still out there, and my experience with cancer is what this blog is all about. Yes, the journey HAS been damned difficult... and not only for me. Chemo-therapy and the odd mixture of side effect management drugs is very distracting on so many levels - but I have already blogged (ad nauseum - pun intended) about those issues. I regularly see the world through a different lens than I ever could have imagined using prior to becoming a member of the cancer club. But the idea of "more difficult" than some other person's journey troubles me. I am not sure that any one else's cancer journey is qualitatively comparable to mine, and I have a hard time imagining my new life journey (one, perhaps, dulled by drugs?) that is so different from the one that I am living. Every cancer treatment regimen is ultimately an experiment of one... an experiment that is statistically informed by the individual treatment "experiments" that preceded it. I am lucky to have been diagnosed now (as opposed to a decade ago), and to be otherwise healthy enough to handle the chemo-therapy. I'm not sure if that is a good answer to the gist of the question, but there it is.
So, let's consider the second approach to the question - about mental taxation and a pro-active spirit. (Again, my thanks to the comment-poster for the complimentary manner in which this question is raised.) I, "Mr. He-Who-Must-Analyze-Everything", cannot imagine being less active than I have been. But yes, that does add to the mental anguish I feel about the way that my experience of the world has changed. And by extension I am sure that the energy I devote to thinking about, researching, analyzing, questioning, and re-analyzing the details of my diagnosis and treatments is not available to my physical self. This begs another question/observation though: would I have it any other way (or perhaps more accurately, can I imagine myself not doing these things)? Not really. I am what I am (apologies to Popeye), and that means constantly re-examining what I know and what that means about my world. So, yes it is more taxing to be self-aware and proactive about my life as a cancer survivor than my life before the diagnosis - but only because I have a new reality to understand and embrace.
I am unsure how I should approach the last approach. "Ignorance is bliss" is one of those aphorisms that I only partially understand. I can accept that there are only so many issues or processes or whatever that one human mind can hold and consciously act upon. Can I really affect the abject poverty of sub-Saharan Africa - caused by centuries of tribal and colonial machinations layered atop environmental changes that transcend locale? What about the plight of homeless persons, with the multiple facets of modern existence that confound their ability to successfully interact with their own cultures? I am (selectively?) ignorant about the details of these situations as I work to handle the complications of a cancer in my life - and might consider that ignorance to be a kind of bliss. But applying that attitude to how one deals with a cancer diagnosis (or any other significant, life-threatening event) doesn't work so well for me. I cannot detach the analytical, proactive aspects of my "self" so as to be able to imagine how it might feel (better or worse) without those characteristics. And it is hard to imagine "not knowing" about a cancer (or the details of the diagnosis, prognosis, treatment, and recovery) as being somehow better than knowing... but that can only apply to me.
Cancer sucks. Period. There is really no blissful ignorance to wallow in once the "c" word enters your life. My friends and family have tolerated my somewhat compulsive, detail-oriented approach to colon cancer, and have encouraged me to find whatever way forward I need. I have been a cranky dude at times, and that has made it difficult for my nearest and dearest support group. On many occasions I have felt the need to apologize for unfortunate utterances (due to fatigue, or chemo-brain, or just plain tiredness). But soon, the transfusions will be finished and I will be moving back toward a "normal" life - whatever the hell that means.
So, the summary answer? Cancer is hard on everyone it touches, however directly or indirectly. Being proactive or hyper-analytical does not change that statement overmuch. We all struggle to decide how much we need to know about some aspect of our lives, and we make decisions based on the amount of information we feel is "enough." I am sure that there is a spectrum of "responses" to this line of questioning, and it's certainly possible that I am a statistical outlier. (I know some people that would argue that that "possibility" is close to 100% likely!) I feel lucky to be who and what I am, and to know that I can rely on a strong, supportive community for support. And that's what matters.
Sunday, November 25, 2007
Thursday, November 22, 2007
Plumbing
Sitting here on Thanksgiving morning, in the relative quiet before the annual storm of friendship descends upon our kitchen and dining room, I wonder how often we really think about the infrastructure of our lives. My day-to-day routine just seems to happen, you know? Some alarm goes off (mine is internal and seems to be pegged on 6am local time - wherever that happens to be), and I begin the day. Most days, this involves some level of external light (sun rising over wisps of fog in the park, a hint of grey light in the eastern sky, or even a blast of golden energy into our second story bedroom) and sound (the steady thrumming of raindrops that are moving through the gutter system outside the window, wind flap-flap-flapping the sign that announces yet another years' holiday sale at the art museum across the street, the Amtrak commuter line to Portland announcing that yes, again, it is heading up the tracks, or even the background street noise from earlier-risers on Liberty and Mission Streets making their way to someplace else). Today is quiet and dark.
I go downstairs to perform ablutions - shaving with an electric razor (to avoid those nasty and potentially infected nicks and cuts), counting the remaining hairs on the top of my head, showering off all of the sleepiness and such. I turn the faucet handle at the sink to rinse off my razor, and clear cold water appears to do my bidding. Seconds later, bearing its micro-burden of beard remnants, that water whisks itself down a little hole and disappears back into the greater puddle we call our sanitary sewer system. Quite the little feat, there, and all assumed and trusted every day of our lives. As they say, "out of sight - out of mind." The water lines coming in to the house, and the sanitary sewer lines that drain our house, are hidden and silent behind lath-and-plaster, PVC, cast iron, and dirt. Yet our lives are so dependent on this hidden engineering.
The upstairs bathroom sink - a high-traffic area for us in the morning and evening - is draining poorly these days. And that means consideration of its health... Are we just looking at a hair/soap scum problem that can be removed by chemical or physical means? Are we talking about some exploratory pipe-work (always a little nerve-wracking, since the exploration can cause damage to water seals and pipe threads, and you may discover a systemic rather than localized problem!)? Do I have the skill, the tools, the replacement supplies... all that I will need to explore and then re-connect my vital sink infrastructure before it is needed again for tooth-brushing and face-washing and the like...?? Oh, the trouble this little drain may cause!
And all about a simple little sink drain! "Can't we call a guy" and make this whole thing go away? Pay someone to bear the burden of uncertainty and to assume the mantle of authority when it comes to diagnosis, prognosis, system design, and reconstruction? Geez. Let's try to plunge it first, then pour some chemicals in... we can always "call a guy" later, right? He'll come in and fix it up like new, no matter what we do first... uh, right?
Funny little story, eh? Variants on this story happen millions of times every day, and with only the smallest of repercussions across the infrastructure of our lives. But then again, take out a major highway bridge across the Mississippi River, or flood out the pumps that keep Manhattan's water table below the level of the deepest subway, or even ignore a backed up sink drain for a couple days, and all hell breaks loose. Now you've got compounding problems everywhere. In my simple example, water begins to spill onto the flooring (which is the ceiling of a lower floor), or the physical/chemical initial treatment finally weakens the main drain pipe enough that a small (unseen) leak develops inside the wall and it begins a different kind of structural problem. Yikes.
We take so much for granted in our modern existence. Clean air - delivered to our lungs 24/7 due to the symbiotic functioning of sunlight and chlorophyll; clean water - evapotranspiration and filtering provided at no additional cost by sunlight and soils; safe food and shelter; and healthy bodies. We have to watch all of these things carefully, maintain their health so to speak, and I realize that there are limits to the ability of one individual/family to manage all of the huge systems that support modern living in America. But awareness and reflection - those are things we can and should control. Be aware, for your drain may be in need of some attention sometime soon. Don't ignore the warning signs, or casually procrastinate on action. Fixing the problem later may cost a lot more than you are willing (or able) to pay.
Peace, and have a joyous day of thanks. I know I will!
I go downstairs to perform ablutions - shaving with an electric razor (to avoid those nasty and potentially infected nicks and cuts), counting the remaining hairs on the top of my head, showering off all of the sleepiness and such. I turn the faucet handle at the sink to rinse off my razor, and clear cold water appears to do my bidding. Seconds later, bearing its micro-burden of beard remnants, that water whisks itself down a little hole and disappears back into the greater puddle we call our sanitary sewer system. Quite the little feat, there, and all assumed and trusted every day of our lives. As they say, "out of sight - out of mind." The water lines coming in to the house, and the sanitary sewer lines that drain our house, are hidden and silent behind lath-and-plaster, PVC, cast iron, and dirt. Yet our lives are so dependent on this hidden engineering.
The upstairs bathroom sink - a high-traffic area for us in the morning and evening - is draining poorly these days. And that means consideration of its health... Are we just looking at a hair/soap scum problem that can be removed by chemical or physical means? Are we talking about some exploratory pipe-work (always a little nerve-wracking, since the exploration can cause damage to water seals and pipe threads, and you may discover a systemic rather than localized problem!)? Do I have the skill, the tools, the replacement supplies... all that I will need to explore and then re-connect my vital sink infrastructure before it is needed again for tooth-brushing and face-washing and the like...?? Oh, the trouble this little drain may cause!
And all about a simple little sink drain! "Can't we call a guy" and make this whole thing go away? Pay someone to bear the burden of uncertainty and to assume the mantle of authority when it comes to diagnosis, prognosis, system design, and reconstruction? Geez. Let's try to plunge it first, then pour some chemicals in... we can always "call a guy" later, right? He'll come in and fix it up like new, no matter what we do first... uh, right?
Funny little story, eh? Variants on this story happen millions of times every day, and with only the smallest of repercussions across the infrastructure of our lives. But then again, take out a major highway bridge across the Mississippi River, or flood out the pumps that keep Manhattan's water table below the level of the deepest subway, or even ignore a backed up sink drain for a couple days, and all hell breaks loose. Now you've got compounding problems everywhere. In my simple example, water begins to spill onto the flooring (which is the ceiling of a lower floor), or the physical/chemical initial treatment finally weakens the main drain pipe enough that a small (unseen) leak develops inside the wall and it begins a different kind of structural problem. Yikes.
We take so much for granted in our modern existence. Clean air - delivered to our lungs 24/7 due to the symbiotic functioning of sunlight and chlorophyll; clean water - evapotranspiration and filtering provided at no additional cost by sunlight and soils; safe food and shelter; and healthy bodies. We have to watch all of these things carefully, maintain their health so to speak, and I realize that there are limits to the ability of one individual/family to manage all of the huge systems that support modern living in America. But awareness and reflection - those are things we can and should control. Be aware, for your drain may be in need of some attention sometime soon. Don't ignore the warning signs, or casually procrastinate on action. Fixing the problem later may cost a lot more than you are willing (or able) to pay.
Peace, and have a joyous day of thanks. I know I will!
Thursday, November 15, 2007
What's up with these hiccups?
So, I guess I am truly back in the land of chemo-therapy. The hiccups have plagued me throughout the day, and none so much as during a public lecture tonight. Sitting in the middle front, I am sure that the speaker could hear every one of them over the course of the hour. Should you ever read my blog, Prof. Prothero, I am sorry if they were any kind of distraction for you... they sure bugged the crap out of me! But these little irritating side effects must mean that the chemo is back on the job.
So, we also had a lengthy discussion with Dr. Blanke, where we talked about the value of each additional treatment to my overall survival, we talked about the December cruise, we talked about the study protocol and my cell counts. The survival numbers apparently are increased by a couple of percentage points with each of the later treatments (the takeaway here is that the earlier treatments are much more important than the later ones), the December cruise (and my unwillingness to travel as a tired, wiped out chemo patient) is definitely on for mid-December and I will not be receiving treatment after November 28 (hopefully, #11), and the study protocols for treatment are absolutely no different than the standard FOLFOX treatment that I would have received at Salem Hospital.
For those of you data hounds (you know who you are!), all of my blood counts were in great shape - nearly as high as the blood counts that I recorded before my first treatment. The ANC was 2.6 (double last week's 1.3), and all of the others were up there too. Go figure. I am getting another series of neupogen shots (beginning on Saturday afternoon) to help support my ability to get treatment #11 on the 28th. By the way, if I can NOT get treated on the 28th due to low blood counts, then #10 will have been the last one. I am ready to be done, whichever way that particular ball bounces.
Too tired to continue this blog... but thanks for your continued interest and support.
So, we also had a lengthy discussion with Dr. Blanke, where we talked about the value of each additional treatment to my overall survival, we talked about the December cruise, we talked about the study protocol and my cell counts. The survival numbers apparently are increased by a couple of percentage points with each of the later treatments (the takeaway here is that the earlier treatments are much more important than the later ones), the December cruise (and my unwillingness to travel as a tired, wiped out chemo patient) is definitely on for mid-December and I will not be receiving treatment after November 28 (hopefully, #11), and the study protocols for treatment are absolutely no different than the standard FOLFOX treatment that I would have received at Salem Hospital.
For those of you data hounds (you know who you are!), all of my blood counts were in great shape - nearly as high as the blood counts that I recorded before my first treatment. The ANC was 2.6 (double last week's 1.3), and all of the others were up there too. Go figure. I am getting another series of neupogen shots (beginning on Saturday afternoon) to help support my ability to get treatment #11 on the 28th. By the way, if I can NOT get treated on the 28th due to low blood counts, then #10 will have been the last one. I am ready to be done, whichever way that particular ball bounces.
Too tired to continue this blog... but thanks for your continued interest and support.
Wednesday, November 14, 2007
Treatment #10
Finally, we can cross off another one of those elusive chemo-therapy treatments! This morning we drove up to the Center for Health and Well-Being (catchy name, don't you think?) and, with the help of frantically-aligned planets, karma sent toward us from around the globe, and a heavy dose of restorative rest over the past five weeks, I passed my blood test and was infused. The dosage of oxaliplatin was again reduced (now down almost 50% from the amount I received in each of the first 8 treatments), as was the 5-FU (down 25%), and I am again receiving the neupogen (1 injection daily for 5 days starting on Saturday). We are told that this delay-stuff happens routinely in about 1/3 of the cases that Dr. Blanke has seen.
So, now I will be tired again (or, MORE tired than I have been for the past several weeks). But, at most, I have two treatments left. And I'll fill you all in on the scenarios in a later post... but I needed to get the blog-post monkey off my back. Thanks for all the support, and karma.
Peace.
So, now I will be tired again (or, MORE tired than I have been for the past several weeks). But, at most, I have two treatments left. And I'll fill you all in on the scenarios in a later post... but I needed to get the blog-post monkey off my back. Thanks for all the support, and karma.
Peace.
Monday, November 5, 2007
Restoratives
I have been told by someone near and dear to my heart that my posts have been somewhat thematically "stuck" for a while now... as in "redundant and whiny." OK. It's hard to be creative and inspired when you are stuck in the middle of an uncomfortable place. Professional writers have a term for this - writer's block. Oh well. Not so much to tell these days that you haven't heard before...
The question is: what to do about it? Try a new topic, then come back to the assignment? Just start writing whatever comes to mind? Do some math homework for a while to get your mind off things? Oops, slipped back into high school English class for a second there. (Didn't work then either.)
The family (and a friend of my daughter) all went to the beach on Sunday. Pacific City and Cape Kiwanda... For many years, the beach has been my "go-to" place when I am working through hard stuff. And this chemo-thing definitely qualifies as one of the hardest things I have ever done. I went to the beach to recover from graduate school and my disappointment with the trials and tribulations of academia. I also went to the beach to recover from the bureaucratic bruising that I received from state government and its ability to crush the energy out of type-A personalities. And now I return (albeit briefly) for a little oceanic restorative treatment during this phase of Ed's cancer world.
I'm not sure what it is, exactly, that the beach does for me. The sounds of waves endlessly marching forward (even in the ebbing of the tide) and seagulls crying, the freshness of the air and its salty tang, the dancing of the sand as the wind blows it into swirls, the froth and splash of water carving sand and rock down to size? To be honest, I wanted to see really BIG waves smashing into headlands - unfortunately, the tide was wrong and we haven't had any good storms to build up the surf. But on this trip I noticed a windblown, gnarled tree growing by itself atop an eroding pile of sand and rock - struggling against the salt air, the absence of sufficient soil, and an overabundance of rain - a survivor. Some of those windblown trees that line the coasts of Oregon and Washington are far older than me, and are barely my height. Truly, an inspiration if ever there was one. And restorative for my soul.
Peace, and warm greetings from the Pacific Northwest.
The question is: what to do about it? Try a new topic, then come back to the assignment? Just start writing whatever comes to mind? Do some math homework for a while to get your mind off things? Oops, slipped back into high school English class for a second there. (Didn't work then either.)
The family (and a friend of my daughter) all went to the beach on Sunday. Pacific City and Cape Kiwanda... For many years, the beach has been my "go-to" place when I am working through hard stuff. And this chemo-thing definitely qualifies as one of the hardest things I have ever done. I went to the beach to recover from graduate school and my disappointment with the trials and tribulations of academia. I also went to the beach to recover from the bureaucratic bruising that I received from state government and its ability to crush the energy out of type-A personalities. And now I return (albeit briefly) for a little oceanic restorative treatment during this phase of Ed's cancer world.
I'm not sure what it is, exactly, that the beach does for me. The sounds of waves endlessly marching forward (even in the ebbing of the tide) and seagulls crying, the freshness of the air and its salty tang, the dancing of the sand as the wind blows it into swirls, the froth and splash of water carving sand and rock down to size? To be honest, I wanted to see really BIG waves smashing into headlands - unfortunately, the tide was wrong and we haven't had any good storms to build up the surf. But on this trip I noticed a windblown, gnarled tree growing by itself atop an eroding pile of sand and rock - struggling against the salt air, the absence of sufficient soil, and an overabundance of rain - a survivor. Some of those windblown trees that line the coasts of Oregon and Washington are far older than me, and are barely my height. Truly, an inspiration if ever there was one. And restorative for my soul.
Peace, and warm greetings from the Pacific Northwest.
Saturday, November 3, 2007
Silence can be deafening
It was another rough week. Well, mostly it was a rough Tuesday and Wednesday, followed by a mostly OK Thursday and then Friday was basically as normal as days can be when you are on "chemo-watch." As many of you know and some of the rest of you have guessed, I did not get treatment #10 this week either. Though the ANC was encouraging enough on Tuesday morning (1.3 by machine count and 1457 by manual count) to have OHSU suggest a re-test on Wednesday morning before we headed up to OHSU, my blood work on Wednesday morning was actually worse than Tuesday (1.2 by machine count). I was both unhappy and very frustrated by this series of events. Gearing up for treatment (physically and mentally) is getting tougher each time, and these delays are very hard for this Type-A individual.
I am so ready for this part of this journey to be over. I struggle with the chemistry part of my preparation for and experience of FOLFOX in that I hate the complex biochemical cycle of anti-emetics, stomach acid control, laxatives, stimulants, and sleeping aids that accompanies the conscious infusion of anti-cancer meds. I hate being tired, and having to rest, and not being able to be the active adult that I have always been. I hate that I am somewhat short-tempered, and that I need to wash my hands so frequently and think carefully about when and where I go places (in order to avoid exposure to cold germs - which seem to congregate where crowds of people go). Like grocery stores, and movie theatres, and, well, most anywhere outside. Result: I have been avoiding this blog.
People began to wonder about its silence. Is it good that he isn't blogging, or did something go wrong? Should I call him, or will that be a bother? I received some really kind support notes - from my Dad, from my Mom, from my neighbor Tom, from Megan (an Internet acquaintance who has been there), and from Angie (a fellow chemo patient at OHSU who just completed her regimen this last month). And I know that there are literally tons of people in my extended support network that think of me from time to time and send uplifting and warm thoughts and energy my way. Thanks. As hard as this week was, I am sure that it would have been completely unbearable without you.
So, the aphorism about "silence being deafening" now has a different meaning for me. Maybe its that the lack of hearing from someone (or absence of a blog post) makes the world we sense just a little deadened - like what happens when you put a pillow over your head. And that's how I felt on Wednesday. I needed to de-sense for a bit, and I retreated from some parts of this cancer life. But I am not giving up. The next month or two will be a roller coaster, I expect, but I have always loved the thrill of real roller coasters. Just ask my brother-in-law and my daughter.
But hey, the Huskies finally managed to play a complete game and beat Stanford, and the Ducks made quite a statement against Arizona State. Do I see Oregon playing Ohio State for the national championship??? Now that would make most Oregonians roar with pride - far louder than a pillow could contain, don't you think?
I am so ready for this part of this journey to be over. I struggle with the chemistry part of my preparation for and experience of FOLFOX in that I hate the complex biochemical cycle of anti-emetics, stomach acid control, laxatives, stimulants, and sleeping aids that accompanies the conscious infusion of anti-cancer meds. I hate being tired, and having to rest, and not being able to be the active adult that I have always been. I hate that I am somewhat short-tempered, and that I need to wash my hands so frequently and think carefully about when and where I go places (in order to avoid exposure to cold germs - which seem to congregate where crowds of people go). Like grocery stores, and movie theatres, and, well, most anywhere outside. Result: I have been avoiding this blog.
People began to wonder about its silence. Is it good that he isn't blogging, or did something go wrong? Should I call him, or will that be a bother? I received some really kind support notes - from my Dad, from my Mom, from my neighbor Tom, from Megan (an Internet acquaintance who has been there), and from Angie (a fellow chemo patient at OHSU who just completed her regimen this last month). And I know that there are literally tons of people in my extended support network that think of me from time to time and send uplifting and warm thoughts and energy my way. Thanks. As hard as this week was, I am sure that it would have been completely unbearable without you.
So, the aphorism about "silence being deafening" now has a different meaning for me. Maybe its that the lack of hearing from someone (or absence of a blog post) makes the world we sense just a little deadened - like what happens when you put a pillow over your head. And that's how I felt on Wednesday. I needed to de-sense for a bit, and I retreated from some parts of this cancer life. But I am not giving up. The next month or two will be a roller coaster, I expect, but I have always loved the thrill of real roller coasters. Just ask my brother-in-law and my daughter.
But hey, the Huskies finally managed to play a complete game and beat Stanford, and the Ducks made quite a statement against Arizona State. Do I see Oregon playing Ohio State for the national championship??? Now that would make most Oregonians roar with pride - far louder than a pillow could contain, don't you think?
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